Living year 20 with a Brain Tumor, the journey continues.

Ron had a follow-up neurology appt today here in FL. Went in with my list of things he needs and came out with the items checked off. One of the items was a speech therapy eval to help me set up his new I-pad. A friend loaned one to us and I have now lost him in it. Need help knowing which speech app to download and set up to assist with his aphasia. Talked to the neurologist about his walking, really no change but I think it could be better - he ordered PT. Even after all this time I am not satisfied with the status quo and want to improve his life. It just takes some motivation from this group for me to make the phone calls and get us moving. Thanks to each of you for sharing your stories of struggles, sadness and successes. Each has helped me maintain my perspective, grattitude and love.

Recent trip to Boston for MRI

It's our turn for PMS - pre-MRI syndrome. Ron had an MRI 12/1 and a follow-up Dr J appt. I have not felt comfortable with the way he is walking, dragging his affected leg. I had been making excuses for the past 2 months and really just need answers. Reality stinks but it is the only way to deal with this. Facing the fear that he may need surgery, again. At minimum perhaps be able to drain some cyst fluid. Or maybe he needs some regular exercise, which he has been without since we have been in NH. You think after 20 years of this, I would cope better. Hoping for the best outcome and answers.

OK here is a synopsis of the day. Stayed at Michele's in Jamaica Plains, cozy and quick non stress drive to hospital. MRI on time, Ron napped during procedure. Dropped of copy of book at patient resource center. Off to donate platelets, parking validated and former Patriot there doing PR for the Kraft Donor Center. Gave donor center copy of Hope along with the communications folks doing the PR.  Determined to share with everyone.   Also provided one to the gift shop in hopes they will sell them there.
Met with Dr J and all is stable. Thought Ron's idea of an ankle brace is a good idea to help him walk better.  

We have been told for 20 years that Ron has a gr ii-iii astrocytoma. Yesterday, better news, they gave us a report that it is a glial neoplasm with ganglian cells. Huh? Categrized as a low grade, pretty rare and typically seen in children. ...Dr J has seen only 11 folks with this type of tumor, only 1 of the 11 had it progress to higher stage. The location and the radiation has caused his deficits. The cysts that he and has had surgery for come from both the tumor and or the weakened brain blood vessels and tissue.
I have to thank BCF for the encouragement to get definitive answers for the questions you helped me formulate on this visit. Don't think I have not asked before but I needed answers from this new surgeon who had done surgery last year.

Thanksgiving

As a way to say thanks to all, I have dropped the price of the book to 14.99 for this weekend.  I encourage you to order a copy for yourself or if you have your own, a copy to share with others. 

Our story as posted on FB groups

 I call it our story because Ron is unable to. Thankfully it is a long one so i will provide some highlights. 20 years ago Ron started complaining of dizziness and was walking into things. I assumed he was having problems with his ears. We had gone SCUBA diving and thought he had damaged his ear dr...um equalizing. He went to see an (ENT) Ear Nost and Throat doctor. As a nurse I typically skip the family practicioner and send him to the specialist. The ENT sent him for an MRI to rule out an acoutic neuroma. Not a great diagnosis but it soon got worse. The neurologist on call at the hospital got Ron's films and immediately called us. I knew it was not good news when a doc you don't know calls you and says to make an appt as soon as possible.

We arrived at her office and I immediately knew when I saw the films that that thing in his brain did not belong there. That was the beginning of our brain tumor journey. An astrocytoma grII-III. 20 years later, radiation, 7 surgeries, more MRI's than I can begin to remember, loss of function in his right side, aphasia, visual changes, seizures, therapy, blood tests, falls and tiredness to make any one give up hope. Not us. He is LIVING with this and each year that we hear all is stable we are reminded how fortunate we are. He is the billboard of courage. It has been difficult watching him slowly loose function in his right side. But he has taught himself how to do everything with the left and continue to walk despite the weakness. The worst part of this is his aphasia. I would love for him to be able to read, share his own story, tell me how he is feeling, tell me what he needs. We have adapted to that loss too.

I would not have learned so much about life and living, hope and love without him. My passion is to share our story and to reach out to others to offer hope and love. We have published a memoir, Hope through the Eyes of Love. I would love to share it with each of you. So glad to be a part of this group and look forward to sharing your journey with you.